C-Falls boy named hospital champion

Jason Albin has a waffle and whipped cream for breakfast, a half-pack of Ramen noodles, some Lucky Charms and Cheetos for lunch, and a low protein spaghetti with butter and salt for supper.

He also drinks a special formula twice a day that contains a variety of necessary vitamins and minerals. It keeps him alive.

“It tastes horrible,” Albin said last week.

A diet like that could prove depressing to a 10-year-old boy, but it doesn’t keep Albin down. He’s a vibrant child, a top soccer player in his age group and a voracious reader.

Albin suffers from a rare condition called phenylketonuria, a genetic disorder that increases the levels of phenylalanine, an amino acid that is obtained through protein in the diet. Left untreated, phenylalanine can build up to harmful levels in the body, causing intellectual disability and other serious health problems.

But Albin’s condition was caught at birth, and he’s been treated for it since he was 10 days old.

In addition to diet control and his twice-daily formula, Albin also needs a medication that costs $6,000 a month. Insurance covers most of the cost, Albin’s mother Michelle explained, but the co-payment is substantial. The family gets help from the Shodair Children’s Hospital’s national organization of rare diseases to cover the payment, she said.

Because of his unfailing spirit, the Helena hospital last week named Albin the 2014 Children’s Miracle Network hospitals champion for the state of Montana. Throughout this year, Jason and his family will serve as local, state and national spokespeople, advocating for the charitable need at children’s hospitals across North America.

Albin will travel with his family to Washington, D.C. in November, with a visit to the White House. Past groups have met with the president. After that, he’ll get an expense-paid trip to Disneyworld. The hospital also made a documentary about Albin.

But Albin is most at home on the soccer field. He plays about six days a week and is on the 12U Flathead Rapids select team. He had a hat trick in one game last fall. He also scored seven goals in a recreational game last fall. When he’s not on the field, he’s reading books. One of his favorite words is hippopotomonstrosesquipedaliophobia — the fear of long words.